INSIDE THIS ISSUE: 1 COMMUNITY ENGAGEMENT 2 WHERE WE’VE BEEN/EVENTS 3 NEWS 4 CO-INVESTIGATORS

NEWSLETTER

COMMUNITY ENGAGEMENT

JULY - SEPTEMBER

Community Research Forum | Tuesday, May 18, 2010

On the evening of Tuesday, May 18th, the Building Trust team held a community research forum at the Healthy Black Family Project™ (HBFP) headquarters at the Kingsley Center in East Liberty. The HBFP was the obvious forum in which to engage community members in an open discussion on research because of the HBFP’s long-term relationship with the community. It was the goal of the Building Trust and PREVENTION teams to engage racial and ethnic minority community members of Pittsburgh in a discussion about research and the research process. Approximately 150 people from the Pittsburgh community attended the event.

To kick off the evening, members of HBFP had a chance to express their excitement and enthusiasm for the program during class demonstrations in dance, body toning

and yoga. The demonstrations were led by the health coaches at HBFP who play a vital role in the program in their interaction with members on a day-to-day basis, in designing exercise classes and leading program orientation.

The research presentation portion of the evening started with brief remarks from Judge Dwayne Woodruff, the Master of Ceremonies; Dr. Stephen B. Thomas, Principal Investigator of the Building Trust Initiative and Malik Bankston, Executive Director of the Kingsley Association. The audience then participated in a short interactive activity concerning some common myths and facts related to biomedical and public health research.

Dr. Charles Reynolds, Principal Investigator of the PREVENTION Study, presented the study’s preliminary results. The PREVENTION Study is a research project examining mental wellness in people 50 years and older. Audience members had a chance to ask questions about the PREVENTION study and research studies in general.

This community event was a big success and the Building Trust team hopes to hold more community research forums in the future. To learn more about other Building Trust events, please go to http://www.healthdisparity.pitt.edu/buildingtrust_events.asp.

The hot summer of 2010 has not slowed the Building Trust team as we juggle the multiple data collection and curriculum development efforts. In July, we did our first webinar with PRIM&R on Distrust, Race and Research, with over 600 registrants. Thanks to the team at PRIM&R for their facilitation and support of the webinar!

We were also thrilled to kick off our media partnership with WPXI in July. On July 12th, we had a local event in which we previewed our 30 minute TV special, “Medical Research, Bioethics and Race: Where Do We Go From Here”, which aired on July 24 and 25th on WPXI and PCNC. Thanks go to Jonas Chaney for his creative and organizational talents in putting the show together and Genetha Short and the WPXI leadership for their support of BT.

We also experienced a major staff change with April Carman’s departure to pursue her first love of global public health work with a position in Kyrgyzstan in which she traveled during her Peace Corps assignment in nearby Uzbekistan. We wish April well and thank her for her tireless efforts to get the administrative structure of Building Trust in place.

As we move to the University of Maryland in September, the BT staff will move across the street to the Center for Bioethics and Health Law. Watch our website for updates on their phone numbers and addresses, as well as our contact information in Maryland. If you have not taken the online survey, please do so by August 31st.

NCMHD and Office of the Director, NIH, American Reinvestment and Recovery Act (1RC2MD004766; PI, Sandra Quinn & Stephen Thomas)

MESSAGE FROM THE PRINCIPAL INVESTIGATORS

(Drs. Sandra Quinn and Stephen Thomas)

(Dance class demonstration)

WHERE WE’VE BEEN

NCMHD and Office of the Director, NIH, American Reinvestment and Recovery Act (1RC2MD004766; PI, Sandra Quinn & Stephen Thomas)

Community Engagement & Research: What Researchers Have to SayThe goal of specific aim 1 is to conduct an online survey with the research community in order to determine best practices in the recruitment and retention of underrepresented racial and ethnic populations in research to decrease and eliminate health disparities. We have had an excellent response from the research community and currently have over 300 principal investigators, co-investigators, research staff, IRB members and IRB staff who have completed the survey. We are excited for all the positive feedback and promotional assistance we have received from outstanding organizations such as the Public Responsibility in Medicine and Research (PRIM&R), National Medical Association, the IRB Forum, and The Black Caucus of Health Workers of APHA. In an effort to gain as much knowledge and insight as possible from the research community, the survey remains open and can be accessed here http://www.healthdisparity.pitt.edu/buildingtrust.asp. We extend our sincere thanks and appreciation to the members of the research community who have shared their knowledge and contributed this important project through the online survey. Now is your opportunity to take the survey before it ends on August 31, 2010.

Community Engagement & Research: What Researchers Have to SayThe objective of Specific Aim 2 is to conduct in-depth telephone interviews with a sample of researchers engaged with minority communities to determine best practices for recruitment and engagement of minorities in research. Our partner, ICF MACRO, has been busy working to schedule and conduct the interviews by July 31, 2010. The interviews have been going well and at this time over 25 interviews have been conducted and 4 more are scheduled. Researchers from around the country and from universities and government agencies are participating. We are thankful to these researchers who have given up their time to contribute to this important work.

Knowledge & Attribues Toward Research: A National Household SurveyICF MACRO is also our partner on Specific Aim 3. Since June they have been conducting telephone surveys with a random sample of African American and Latino adults over 18. The goal of Specific Aim 3 is to identify the level of knowledge of research, research terminology, informed consent procedures, human subjects protections and trust in the minority population. Over 1,000 minorities have been surveyed at this time. The telephone survey will continue through September 2010.

Educating Minority Communities about Research: Designing an Educational InterventionWe have been working with WPXI-TV (NBC affiliate) as part of our community outreach efforts for specific aim 4, which is to develop and disseminate a comprehensive educational program on health and medical research for minority communities. Our first 30-minute documentary about the Building Trust project is currently in production, along with several public service announcements. These will air on WPXI-TV later this summer. WPXI is also in the process of creating a fun, community-centered webpage to raise awareness of health research. The station has further assisted our project by filming recent events attended by the Building Trust team, such as the Healthy Black

Academy for Health Equity: Advancing Equity in Health - Eliminating Health Disparities2010 Conference: Achieving Health Equity in the Era of Healthcare ReformAugust 18-20, 2010Littleton, COBuilding Trust between Minorities and Researchers panel sessionhttp://academyforhealthequity.vpweb.com/2010-Conference.html

APHA 138th Annual Meeting & Expo: Social JusticeNovember 9, 2010Denver, COBuilding Trust between Minorities and Researchers panel session with the APHA Ethics special interest group (session #4359.0)Session description: http://apha.confex.com/apha/138am/web-program/Session30866.htmlAPHA annual meeting information: http://www.apha.org/meetings/

PRIM&R’s Advancing Ethical Research ConferenceDecember 5-8, 2010San Diego, CAhttp://www.primr.org/Conferences.aspx?id=7717

On Sunday, December 5th the Building Trust team will present a full-day preconference session, which will include results from our three studies, an overview of our curricula development methods, interactive examples of our Building Trust curricula and the opportunity for discussion and feedback.

On Tuesday, December 7th, the Building Trust team will present two 90 minute sessions. One session will review the findings from our three studies (Specific Aims 1-3) and one session will be an overview of our Building Trust curricula for both community members and research professionals (Specific Aims 4 & 5).

BUILDING TRUST EVENTS

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Family Project Community Forum and the PRIM&R regional conference in Chicago. We will be incorporating this and other footage into upcoming presentations and educational materials. In addition, we are working with the University of Pittsburgh Center for Instructional Development & Distance Education (CIDDE) to finalize the framework for five core modules of the Building Trust Community Curriculum.

Educating Researchers about Minority Communities: Building Skills for Community Based ResearchWe are also working with CIDDE to develop core modules for the Building Trust Researcher Curriculum. This is in line with specific aim 5, which is to enhance the capacity of investigators to engage minorities and their communities. WPXI has also been assisting us in the production of informed consent role playing scenarios to be used as teaching tools. Our professional educational outreach continues as well with an upcoming PRIM&R webinar. The PIs will also be presenting at the PRIM&R Advancing Ethical Research, American Public Health Association, and Academy for Health Equity conferences this year.

NEWS

Public Responsibility in Medicine & Research (PRIM&R) Regional Programs

Tuesday, May 4, 2010

Building Trust is proud to partner with PRIM&R, and as part of this collaboration, the Building Trust team led a session about the initiative during the recent regional program in Chicago, IL. The interactive session was attended by approximately thirty research, medical, and bioethics professionals from across the country. The Building Trust Principal Investigators, Dr. Sandra Quinn and Dr. Stephen Thomas, started the session with an introduction to the Building Trust initiative and its goals, and introduced The Recruitment-Retention Continuum: Challenges and Barriers on the Road to Informed Consent.

In the second part of the session, Dr. David Barnard, Co-Investigator, and Jonas Chaney, a standardized patient actor with the Pitt Advanced Clinical Education Center, demonstrated the use of patient simulators to teach researchers how they might improve communication with potential research participants during the recruitment and informed consent process. The facilitators and attendees had a lively discussion with many attendees expressing their own or institutional experiences related to barriers in the recruitment process and retaining racial and ethnic minority participants. The overall feedback was positive, and those in attendance are looking forward to progress on the Building Trust initiative and resulting curriculum for community members and research professionals.

After the morning program with the general audience, the National Advisory Board convened its first meeting with the Principal Investigators, Dr. Barnard, one of the Co-Is, and staff members to discuss the goals of the initiative and how the board members might contribute to the success of the project. Although not everyone was able to attend in person, we were able to have a lively and enlightening conversation with NAB members present in Chicago and those who joined us by telephone.

At the end of the day, the group dispersed with renewed energy to continue the conversation of how to overcome the challenges and barriers of recruiting and retaining racial and ethnic minorities. We are fortunate to have a stellar group of members from diverse disciplines and backgrounds, and look forward to continued interaction as we move forward with this initiative.

NCMHD and Office of the Director, NIH, American Reinvestment and Recovery Act (1RC2MD004766; PI, Sandra Quinn & Stephen Thomas)

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(L to R: Alexandra Adams, James Thomas, Troy Duster, Sandra Quinn, Reuben Warren, Stephen B. Thomas)

Researchers move to University of Maryland

The old proverb says that the one thing in life that is constant is change. True to form, the Building Trust between Minorities and Researchers team will be experiencing some big changes this summer.

As of September 1, 2010, Drs. Stephen Thomas, Sandra Quinn, James Butler, Craig Fryer and Mary Garza will join the faculty of the School of Public Health at the University of Maryland in College Park. As per the request of the Dean, Robert S. Gold, they have agreed to become part of three different departments in the school; Public and Community Health, Health Services Administration, and Family Science. Dr. Quinn will also serve as Associate Dean for Public Health Initiatives.

In addition to their roles as faculty, the team will establish the Center for Health Equity at the University of Maryland, a campus-wide research initiative designed to build broad collaborations for related research and service from among the many schools, colleges, and agencies across the University of Maryland System.

The Center for Health Equity will be charged with addressing the health issues of residents across the state of Maryland. Dr. Thomas will direct the center and Drs. Butler, Fryer and Garza will all have leadership roles in the center. Dr. Quinn will represent the Office of the Dean in the center’s leadership structure.

The Building Trust Principal Investigators, Drs. Stephen Thomas and Sandra Quinn, will continue to lead the Building Trust project from Maryland with sub-contracts to the University of Pittsburgh, PRIM&R, ICF Macro and WPXI. Dr. David Barnard will provide the local administrative oversight for the BT team in Pittsburgh.

Stay tuned to the Building Trust website for updates on telephone numbers. All staff members’ email addresses will remain the same. We will update the email addresses of the Maryland-bound team later this summer.

(L to R: Craig Fryer, Mary Garza, Stephen Thomas, Sandra Quinn, James Butler)

MEET THE CO-INVESTIGATORS

BUILDING TRUST BETWEEN MINORITIES AND RESEARCHERS Research Center of Excellence on Minority Health Disparities Graduate School of Public Health University of Pittsburgh127A Parran Hall, 130 Desoto StreetPittsburgh, PA 15261Office: 412-383-9827 Email: BuildingTrust@gsph.pitt.eduWebsite: http://www.healthdisparity.pitt.edu/buildingtrust.asp

DAVID BARNARD, PhD, JDDavid Barnard, PhD, is a Professor of Medicine and Law at the University of Pittsburgh, where he is appointed in the Department of Medicine, the Law School, and the Center for Bioethics and Health Law. He is a member of the core faculty in the Global Health Track for the Internal Medicine Residency Program at the School of Medicine. At the School of Law, he is faculty advisor for the Global Health and Human Rights Track in the Health Law Certificate Program.

JAMES BUTLER, DrPH, MEdJames Butler, DrPH, MEd, is an Assistant Professor in the Department of Behavioral and Community Health Sciences at the Graduate School of Public Health, University of Pittsburgh. His research is anchored in an ecological framework that incorporates individual, social structure and environmental influences in understanding and eliminating health disparities. Utilizing a community-based participatory research approach, he specifically focuses on tobacco control and prevention among African American residents of public housing.

CRAIG S. FRYER, DrPH, MPHCraig S. Fryer, DrPH, MPH is an Assistant Professor in the Department of Behavioral and Community Health Sciences at the University of Pittsburgh, Graduate School of Public Health and Assistant Director in the School’s Center for Minority Health. Dr. Fryer’s work has focused on issues of substance use and dependence, specifically tobacco - related health disparities including marijuana use among youth and young adult populations. Collateral research endeavors include: mixed methods research; HIV/AIDS and STI prevention; adolescent health; community-based participatory research; and the recruitment and retention of underrepresented communities.

MARY A. GARZA, PhD, MPHMary A.Garza, PhD, MPH is an Assistant Professor in the Department of Behavioral and Community Health Sciences and the Deputy Director, Center for Minority Health, both in the Graduate School of Public Health at the University of Pittsburgh. Dr. Garza has a strong interest in cancer health disparities research, including understanding the interplay of psychosocial, behavioral, and neighborhood-level factors associated with health behavior; specifically, the factors related to sustained compliance with cancer screening and health-related decision making.

KEVIN H. KIM, PhDDr. Kevin H. Kim is an Associate Professor of the Research Methodology program in the School of Education at the University of Pittsburgh. Dr. Kim is interested in developing new statistical methods to be used in education, behavioral and social sciences. His research interests include but are not limited to structural equation modeling, multivariate statistics, multilevel modeling, and Asian American Mental Health interplay of psychosocial, behavioral, and neighborhood-level factors associated with health behavior; specifically, the factors related to sustained compliance with cancer screening and health-related decision making.

CHRISTOPHER RYAN, PhDChristopher Ryan, PhD, is Professor of Psychiatry at the University of Pittsburgh School of Medicine, and also Professor of Psychology, Health & Community Systems, and Clinical and Translational Science. His research focuses on the neuropsychological correlates and consequences of medical illnesses, particularly diabetes mellitus. Currently he serves as Director of the University’s Institutional Review Board and is Co-Director of the Regulatory Knowledge and Support Core of the University’s Clinical and Translational Science Institute.

NCMHD and Office of the Director, NIH, American Reinvestment and Recovery Act (1RC2MD004766; PI, Sandra Quinn & Stephen Thomas)

© 2010 All Rights Reserved Worldwide

The project described was supported by Award Number RC2MD004766 from the National Center On Minority Health And Health Disparities. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center On Minority Health And Health Disparities of the National Institutes of Health.

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